Our journey in the Autism Spectrum

For whatever reason, though it’s something anxiety related I’m guessing (which deserves a much longer post), as soon as Henry puts on his jacket to wait (inside) for the morning bus he stops talking.  Every morning he asks earlier and earlier if he can put on his jacket.  This morning this is how this conversation played out.

HENRY: Can I put on my jacket now?

ME: *glancing at the clock* You’ve still got 15 minutes until the bus comes.  If you can continue talking with us when appropriate then you can put on your jacket.

HENRY: But I can’t.  It’s a ….thing.

*his new catch-all phrase for whatever he decides he is compelled to do.*

ME: No. It’s not ‘a thing’. You have words. Use them.

LUCY: But not the bad ones, Henry.

…and there you go.

It’s been months and months since I’ve blogged.  The more time that has passed I’ve felt more and more pressure to write something.  Anything.  But what to write about?  I’ve just not been feelin’ it. As we all know, April is autism awareness/acceptance month so, as my first post since September, I thought I’d do something a little different.

In case you are new to my Facebook page and/or blog, I love chameleons.  I relate to their changing colors and camouflage; their ability to  always change and blend in (or not blend in). For me they also represent the diversity in everyone and their spectrum of many colors relates very well to the Autism Spectrum. It’s a whole big jumble of layers of  awesome symbolism! 

Anyway, getting to the point, I thought it would be fun to have my readers and fans share their own diversity; their “chameleon-ness” as it were.  Below is a link for a PDF file that can be printed out and colored. I’m encouraging anyone and EVERYONE to color their chameleons in a way that best expresses themselves.  This is for kids and adults! Anyone! Whether you are on the Spectrum or not!!!

I would love it, if you are so inclined, to take a picture of you and/or your little chameleon(s) and share your creations! I will be accepting pictures all this month of April. You can share them on my Facebook page, A Chameleon in the Spectrum or via my e-mail at inthespectrum@hotmail.com .

Your photos can be of just your completed chameleon coloring page or with the face of the artist as well.  No names or pictures will be used unless permission is given. I thank you in advance for your participation.

This April 2014 let’s all express,celebrate and share our diversity!!!

CLICK THIS LINK TO PRINT YOUR CHAMELEON:  Chameleon Coloring Page

There is Always Recourse

Recourse:   a source of help in a difficult situation  syn. option, possibility, alternative, resort, way out, hope, remedy.

There have been so many incredible blogs posting about the horrible tragedy of Kelli and Issy that I’m not even going to pretend that I can write anything that hasn’t already been written and certainly I could never share as eloquently as those bloggers that I have read today.   But there is a lump in my throat that is just not going away tonight.

Another horrific story of an autism mom who broke.  Who was so broken she felt there was no other solution.  She had tried. She WAS TRYING to get her autistic daughter the help she needed and the education that she deserved.  This mama was trying to keep her family safe.  She was advocating for her daughter.  And what completely blew me away is that she has been WRITING about her journey!  She is a BLOGGER!  One of “us”.  A mom blogger sharing about her autistic child and their family…the good, the bad, and the ugly.

Like me.  Like so many of us out there.

And she was tired.  So very tired.  Now she and her daughter are lying in hospital beds after a failed murder/suicide attempt.  I can not comprehend this.

We read each others blogs.

We share and comment.

We, for the most part, are supportive of each other.

We reach out to each other.

We reach out to help.

We reach out to be heard.

We reach out to know we are not alone.

I cannot comprehend what Kelli was going through.  I can not begin to imagine feeling so desperate, so tired, so…broken, that she felt this was her only choice.  I cannot understand it nor can I condone it.  But I also will not judge her.  My heart is aching tonight.  Not for Kelli’s actions, but for her, for Issy , for their family, and for the path that lead Kelli to make the choice that she did.

For those of you who may be reading this, please know that  there is always recourse.  There MUST be!  We need to ensure it!  We must do everything and anything to find that source of help, whether for ourselves or for someone else.  Keep reaching out!  This is what we must do.  THIS is our recourse.

The Third Time Is the Claw

Last weekend BDC took the kids to a birthday party at one of those arcade game places that serves pizza. No, not the one with that cheesy mouse character.  No, this particular venue I like to refer to as “the mouse on steroids”.  Everything is bigger, “better” and more-of.  There is laser tag, bumper cars  and go-karts in addition to a crap-load of video arcade games; all under one roof.  There is an all-you-can-eat buffet, salad bar and dessert bar.  As a potential selling point for the parents, there are several themed dining areas separate from the gaming area where the adults can hide enjoy a fairly tasty meal.  I highly recommend the giant cinnamon rolls.  But I digress.

So, in this super-sized world of multi-sensory stimulation, the first thing that draws my kiddos’ attention (after the go-karts & bumper cars) is the giant claw machine.  In my experience as a mother of three darling children, these machines are nothing but heartache and are the money-pits of all arcade games.  For $3 you get one chance to pluck out  a prize with a claw that barely has any actual grasping capabilities.  (I’m being generous with my use of “barely”.)  At least with the other games there is a pretty good chance for them to win a few tickets that can be accumulated to trade in at the prize counter for a piece of gum.  But this giant claw machine has piles of BIG toys.  Real prizes.  All just heaped up in a tower of treasures enclosed in a crystal clear glass box perfect for the picking.  And the heavens open to shine down the brightest of lights on these gems.

Of course your kid wants the one and only, awesome, giant, super-shiny,-blingy-bling thing inside that prize bin.  They want it bad.  They HAVE to have it.  They are CERTAIN, beyond any shadow of a doubt, that with their super-power claw skills, they can surely win that prize and it will forever be held in highest regard of all the crappy treasured arcade game prizes.  After several tries accompanied by multiple outbursts, a flood of tears and their college tuition, they MIGHT finally grab a .25 cent stuffed something-or-other.   (That new X-Box they wanted for their birthday but didn’t get because it was too expensive now looks like a bargain.)   Hence why BDC and I usually bribe (because it’s just cheaper) encourage the kids to forego the claw.  Although, I admit there have been times when our patience has been tried as thin as tissue paper and we, ourselves, are sensory overloaded, that we’ve been known to cave acquiesce. That being said, we have the condition of  “three tries only”.

This recent birthday party, with BDC running solo with the two little ones, was one of those times.  $3. Nothing.  Another $3.  Nothing.  Okay.  This is it.  “This is your last try Henry.”  $3.  Henry positions the claw.  Runs to one side to eye-ball the logistics.  Then to the other side.  “Henry you have 12 seconds to try to make a grab.”  More assessment.  Then he releases the claw which grabs a most coveted prize and moves toward the shoot, prize dangling precariously.  And then drops.  Into the shoot!  Hoots of glorious joy!  Henry won  a giant, nubby, yellow ball, the most appropriate of prizes for my little dude on the spectrum!  Which, by the way, to date, is being held in the highest regard of all arcade game prizes!

My proud boy sits upon his treasure!

My proud boy sits upon his treasure!

Gone Fishin’

fishing boy

It started with a dollar store fishing pole,  various plastic sea life, and a cheap blow-up wading pool. Although, we probably should have seen this one coming as Henry has always liked string, ribbon, yarn, rope, basically anything that can be whipped around and/or tied onto something and used to drag, pick up, or tie together. You get the idea.

Henry would place things around on the floor and then hold one of his tow trucks up using the string and hook to try to pick them up. When I asked him about it he said, “I’m fishin’.” He began to “fish” more often with just about anything he could get his hands on that he thought he could get to work. Toys were starting to get “broken” with pieces missing. Eventually I would find those pieces tied to yarn or string and being used at “bait” or a “hook”.  Any toy with a magnetic end was even more prized!

Being that BDC and I can be a little slow on the uptake sometimes, it took a bit before we thought of the plastic fishing pole.   It was a hit!  “Duh!”

At one point Henry began asking for an aquarium.  At first I thought how great this was that Henry could identify that perhaps this would be calming for him.  And then I realized…

“Henry, you know that if we get a fish aquarium, you can’t actually ‘fish’ in it.”

“Oh.”

He stopped asking for the aquarium.  The plastic pole and wading pool would have to suffice.

A couple of years ago, one of BDC’s sisters and her husband bought a home on a lovely private lake.  BDC’s family loves to fish and the private dock was perfect for casual fishing.  On one of our rare visits out that way, we introduced Henry and Lucy to reel fishing. (Spelling pun intended. Sorry. Couldn’t help myself).    Given the low threshold for patience, Henry doesn’t always respond well to instruction.  He thinks he knows and he can do it himself.  Then frustration sets in and he relents to some very brief teaching.  Despite having small outbursts regarding bait/flies, casting form, and not catching any fish, Henry seemed to enjoy actual fishing.  (In regard to the reference to “actual fishing”, it should go without saying, “relatively speaking”.)

Back then Henry’s bug issues were not near as bad although the dragon flies and occasional wasp buzzing by was met with an outburst, he was distracted enough to keep at it.   Cast, reel in.  Cast, reel in… did I mention Henry’s impatience and that we were on a small lake?  The bobber scarcely hit the water before he was reeling it back in.

Note to Uncle Kevin and Aunt Lisa:  Your nephew may have potential as a successful trout fisherman if you ever want to take him fly fishing!  Except you’ll have to clear out all of the bugs first.  Good luck with that.

Since the legendary “Cicada Swarm of 2011″, Henry’s fear of bugs has gotten worse every year.  He’s progressed from it being an annoyance to a dislike to an all out panicked phobia.   It’s been a real problem this summer.

This past June, we once again headed out to BDC’s sister’s place.  All Henry and Lucy can talk about is fishing out at Aunt Leslie’s and Uncle Jay’s house!  I was completely prepared for Henry to take one step out the back door, discover a bug, and spend the remainder of our stay inside.  Surprisingly he made it through the yard and down onto the dock with only a few shrieks and episodes of spastic waving of his arms to keep away any bugs; real or perceived.

This time around, both Henry and Lucy were really getting the hang of casting and they were doing a pretty impressive job at it.  Henry even kept fishing after getting a hook caught in his hand!  Luckily for me I was inside at the time and Grant got to deal with that. ~Thanks, babe!  Anyway, Henry got right back in there and kept fishing!  That’s HUGE!  Henry still won’t touch the bait, whether it’s real or artificial and certainly as much as he wants to get close to a caught fish, he can’t get too close.  But I can’t blame him there.  It wasn’t until I was an adult, that I could bait my own hook.  And sometimes I still get a bit squeamish when taking a fish off the hook.  I’m just so proud of Henry that he kept at it even with all the challenges around it that he had to deal with!

I have always enjoyed fishing and I would love for the kids to stay with it.  This could be one of the simple and rare activities that we could all enjoy doing together as a family!  How cool would that be?!?  And it will be interesting to see what Henry does when he actually catches a fish some day!

gone fishin sign

[Ed. NoteThis is my first writing since May.  I know.  It's been too long.  I know.  I've written something now.  So, that is that.  If you feel you can get over it, please read on. ~Thank you for your understanding.  It is much appreciated!!!  ;-) ]

We’ve been on this autism journey for close to 4 years now.  (Even longer if you count the time before the diagnosis.)  You’d think, at least I think, that we would be better prepared for…you know, anything.  In our case, occasionally sometimes  often, there is not near enough of the preparation.  And it kicks me in the gut every time.

Lucy had a friend, Zach*, over and the kids were playing so well that he stayed for dinner.  On a whim…I know.  See?  There was my first mistake.  Anyway, moving along… On a whim, I thought it would be a nice treat to stop at a near-by sno-cone shack on our way back to Zach’s house.  It’s rare that we do these kinds of things and I really didn’t think about this as being anything other than a typical, fun summer experience.  (Mistake #2 for those who like to keep track.) In the car we told the kids where we were stopping and the news was, of course, well received.  We got our sno-cones with no fuss.  Even their choice of flavors were quickly decided upon.

Because my husband has issues with kids eating shaved ice, covered in sticky syrup, packed high above the rim of a styrofoam cup (or anything else remotely messy) in our van, we would eat outside.  The breeze was lovely enough that it was pleasant outside…if you were sitting still in some shade, eating a deliciously cold treat.  Which was my plan. (Mistake #3, thinking I actually had “a plan”.)

Due to Henry’s recent paralyzing fear of bugs (which seems to be getting progressively worse and which we’ve been battling all summer)  I did a quick scan of the surroundings to scout our options while we waited for our order.  There were only two other patrons sitting on their car on the opposite side of the lot.  I chose well, or so I thought, by picking an umbrella-covered table away from the others that wasn’t at all sticky.  No trash cans or potted, flowering plants were anywhere near-by.  It was actually located on the paved lot right next door to the sno-cone shack.  This meant we had to cross a very short, grassy incline.  Icy treats in hand, we headed that way.  Henry hit the brakes as soon as we got to the grass and refused to go further.  My heart began to sink.  I immediately got a bad feeling about where this was headed.

Grass equates to clover which means bees and other bugs.  I got Lucy and Zach settled at the table while BDC dealt with Henry.  After quite a bit of encouragement he made it to the table.  But he refused to sit.  Henry was in all-out panic-mode, searching the area for flying and crawling bugs.   He was continuously jumping and darting away from “bugs”.    No amount of reasoning or encouragement would stop his outbursts and crying about these perceived bugs.

Now, as someone who also hates bugs, especially when I’m eating, I can tell you that there really were no bugs!  There were none on the table or the on the ground around the table.  Only an occasional fly or dragon-fly-type bug would buzz past well away from us.  Even if you were paying attention, which I most certainly was, there would have seemed to have been no bugs at all.

As a full meltdown ensued, BDC offered to sit in the van with him but he would have to leave his sno-cone at the table.  Whether or not we made the right decision on that, I don’t know. (Probable mistake #4)  But, in this situation we stuck to our guns about not eating these drippy, messy things in the van.   Off they went, with Henry not only upset about the bugs but also having to leave his sno-cone behind.  Yet, he did.

I sat with Lucy and Zach as they enjoyed their sno-cones.  With a lump in my throat I watched Henry’s begin to melt.    I was struggling not to let tears well up in my eyes.  Even going for a summer treat just couldn’t be simple.  And most certainly it was not fun for the little dude.  When I couldn’t take it anymore I sent a text to Grant.

“Is he calm at all?  What do you want to do about his sno-cone?”

At this point, please know that my concern about the sno-cone was nothing to do about it going in the trash.  It was about my boy  missing out on something he loved and had earned.  That is what was breaking my heart.

After a minute or so, I saw the van doors open and I could hear Grant talking to Henry.  He was going to try again.  I know Henry wanted to enjoy his sno-cone,  just like any kid would.  But for him, right now, outside is just so very difficult.  Henry was relatively quiet (I use the word “quiet” loosely here) as he walked back to us but he was nowhere near calm.  At this point he was truly terrified of a bug getting on him or even near him.  I got him to sit next to me and he asked me to hug him and hold him tight.  I promised him I would not let any bug get on him and I would keep them all away.  He got through about 1/2 his dessert but just barely.  It was too much.  He was done and begged to go back to the car.  Grant went with him.  I sat for a few more minutes with Zach and Lucy while they finished up and we soon headed back to the car as well.

Henry was already so much more relaxed back in the van.  But that didn’t make me feel much better.  I question just about every decision we make when it comes to our kids, especially of course, when things don’t go well.   We try, very carefully, to calculate the situations or experiences  where we might want to “expand our Kansas”.   With Henry, we need to push (gently, carefully) to try more things, DO more, experience MORE.  Was it wrong to want to be able to sit outside with our sno-cones?  Should we have let Henry sit inside while the rest of us sat outside?  Should we even have attempted this at all just “on a whim”?   What was I thinking?!?  How could I not have seen the potential disaster in this?  On the other hand… it was just going for a damn sno-cone!

Clearly, this experience was DIFFICULT for Henry.  Painful, even.   Which, of course,  makes it painful for Grant and me.   We want to help him.  It frustrates us when we can’t and it’s maddening that the things we need to help him with seem so small, so simple at times.  And sometimes that can be difficult for me to accept.

*NOTE:  Zach’s family has become good friends of ours over the last year.  Zach has a twin brother with autism.  Through this whole ordeal, Zach went on as if nothing out of the ordinary was happening and continued to behave wonderfully!  We are grateful to have friends like Zach and his whole family!

They Accepted

This last part of the school year has been a bit challenging for our little dude. We are getting some notes coming home in his daily binder; “rough day”, “agitated”, “did not want to work with classmates in group”, “impatient”, “not waiting his turn”, etc. It’s the end of the school year and Henry is having a hard time holding it together some days. This is not surprising to me for a kid with an autism diagnosis. We work daily in the area of his social/emotional challenges. Always. Still.

Last week I had gotten a note and a call from the principal’s office that Henry was bothering some girls on the playground and he reached out and grabbed one of them by the shirt. This week a note came home, “arguing today”. Henry doesn’t like to get into trouble. And he really doesn’t like to talk about it when he does get into it. You can almost see how physically painful it is for him to admit he is wrong or to apologize for something. We have been working VERY hard on how to handle this in an acceptable manner. He wants to play with the other kids sometimes but he just doesn’t know how. Nor does he get those social cues when the kids don’t want to play with him or play his way. Another not-so-surprising aspect of his autism diagnosis. This is his most challenging area for sure! I was wondering if this most recent note had something to do with the playground issue from last week. I worry a great deal about what these social challenges might mean for Henry as he grows up. For how long will these challenges be oh-so-challenging for him? Will he ever learn how to navigate these waters appropriately? Will the kids ever understand and accept him for who he is?

When I questioned Henry about who he was arguing with I got the typical first response I usually get from him, “I don’t want to talk about it!” He had just come home from school which is a rough time of day anyway. Fine. Let him decompress.

In continuing with our vigilance in using everything as a possible teachable moment, later that night before bed when all was quieting down, I asked him again who he was arguing with. “Mrs. Q.” (This is his SSD resource teacher that he adores so I was beginning to worry what this was all about.)

“Why were you arguing with Mrs. Q?”

“I don’t know, Mom. Sometimes it seems like I just can’t help it.”

Fair enough. Not that this is acceptable, mind you, but at least he was thinking about it and talking about it calmly with me.

“Well,” I said, “don’t you think you should apologize to Mrs. Q for your behavior?”

“Yeah.”

“Okay, good. So when do you see her next?”

“I see her every day, Mom.” he told me in his “duh!” tone.

“Okay, so the next time you are with her you should apologize and try to work harder at not arguing with her. Alright?”

“Yeah, okay.”

I didn’t say anymore about it after that until he got home from school the next day. “Hey, dude, did you talk with Mrs. Q?”

“Yes, and I said I was sorry and I will try to be better.” (I don’t know if he actually did apologize to her but for now I am giving him the benefit of the doubt.) I figured this was the end of it at this point and we let it go.

However, this morning while the little ones were eating breakfast and I was getting clothes ready for the day, Henry came to me and said, “Mom, you know how I told you I apologized to Mrs. Q?”

Uh oh…”Yes, I remember.”

“Weeeellllllllll, I also apologized to the girls I was bothering the other day.” And with a big grin on his face he said, “And they accepted!”

ummmm….wow! Now, I don’t know if there was any adult intervention or whether he did this on his own but still, big. huge. wow.

“Oh, dude! That is really great! I am so proud of you! Great job!” But, again, as we continually try to practice and remind and practice more, I couldn’t help adding, “So now that you said you were sorry for that, you will try hard and not bother them anymore, right?” While he is getting better at saying he is sorry, he still has a hard time stopping some of the behaviors.

“Right. But can I play with them?”

“Of course! But you need to asked them if you can play with them first. And if they say no, then you need to leave them alone, okay?”

“Yeah. But then can I still wave to them and say hi?”

Oh my sweet little dude! “Yes! That would be very nice of you!”

I realize that Henry’s classmates will never really understand how hard all of this social interaction is for him. But today, I feel we are one more step closer to acceptance!

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